Vanessa Burden, Anne Axford and Gill Yaz at the Riverside Centre. Thanks to Vanessa for being our hostess for the day, and to Gill for coming down to the Island from SHINE'S HQ to spend time at Haylands Primary helping staff understand and manage a pupil with Hydrocephalus, and at the Riverside Centre to meet with individual members. If you didn't manage to meet with Gill and would like her contact details, let us know. She is always helpful and can make contact with GPs and other health professionals to mediate if need be.
This link takes you to an important report from the House of Lords "Stronger Charities for a Stronger Society" - it's worth a read. It pays particular attention to small charities and the important role they play in our society. This is us!
Gill Yaz, Health Development Manager at SHINE, the national charity for Spina Bifida and Hydrocephalus, will be on the Island on 30th & 31st March. She will be visiting Haylands Primary School on 30th March to help staff their better understand managing a pupil with hydrocephalus. On 31st March she will be at the Riverside Centre in Newport, with booked one to one appointments with members. It is not too late to book time to see her - we can extend her timetable by one more hour so we could fit in a 1pm appointment. Contact Freya Conway our secretary if you are interested.
Isle of Wight Association for Spina Bifida and Hydrocephalus Annual General Meeting
1.30pm Friday 3rd March
The forty-eighth ANNUAL GENERAL MEETING was held at the RIVERSIDE CENTRE, The Quay, Newport, IW on Friday 3rd March 2017 and the committee was relected.
Annual Report 2016
The year has been a successful one. The Association is on a sound financial footing and bank balances are healthy, although we should not be complacent. The cost of wheelchairs continues to rise and members’ needs are diverse and complex so we should continue to work hard not only in raising funds but in raising our profile.
Thanks should go to the committee members who have worked hard throughout the year in both these activities. Particular mention should go to the Revert/Paul families for their unstinting work, not least to Sandra for her work as our Treasurer. We also thank the Flynns for all that they do. The Woodcock family have worked tirelessly throughout the year to raise funds and spread the word about our association. We are lucky to have such a talented and hard working membership. I give my thanks to Sylvia Griffiths for her continuing support as our President, and to Freya Conway who has proved to be a most efficient and hard working Secretary.
This year we welcome Sue Price as our independent auditor, and thank her for making sure that our accounts are in order.
Our youngest member, Joey Goldsmith was born in the spring and is doing well. Sadly, we lost a long standing member, Jill Christian, during the year. The profile of our membership continues to show an increase in adults, with complex and challenging needs.
We have seen two members benefit from the Lymphoedema service at the Earl Mountbatten Hospice, referred through their GPs, and we have welcomed Gill Yaz from SHINE again, providing helpful and sound advice to those who have spent time with her.
And looking forward to 2017, it is time that we raised our profile further, and challenged the medical profession to increase their understanding and knowledge of both Spina Bifida and Hydrocephalus.
Gill Yaz from SHINE will be at the Riverside Centre on 31st March between 10am and 1pm and you can visit her for one to one advice. Contact our secretary, Freya Conway, to book a time.
Gill Yaz, Health Development Manager at SHINE, the national charity for Spina Bifida and Hydrocephalus,visited the Island in March and talked to members about a range of issues, including continence. Individual members had time with Gill and found her knowledge and advice very helpful. She will be back again, so get in touch if you have something you would like to talk to her about.
March 12th was our first fundraising event of the year at Morrison's in Newport. Nearly £400 raised - thanks to all those who collected and those who contributed!
We are here to support families and individuals on the Isle of Wight who have Spina Bifida and/or Hydrocephalus. If you know of someone who has these conditions, please do put them in touch with us. We are here to help in practical ways and can offer advice and support.
A link to the neurology department at St Mary's hospital which may be useful for our members.
Hydrocephalus talk 2.pptx
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Presentation-isle of wight 3 nov.pptx
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"As a child I was encouraged by my parents to believe I could achieve anything, and that attitude has never left me. I find it hard at times to think of myself as disabled, I just do things differently. Spina bifida need not limit a child's opportunities to progress and excel in life."
Baroness Grey-Thompson DBE
A fish and chip supper and quiz at East Cowes Town Hall is planned for 8th April 2016 - do let us know if you plan to come. It's free for disabled members and carers, and children - £5 for everyone else - what else would you like to see happening?
in 2014 we held a Hydrocephalus Study day that was well attended by health and social care professionals, as well as educationalists, members, and families. Mr Ryan Waters, Consultant Paediatric Neurosurgeon at the Wessex Neurological Centre in Southampton and Gill Yaz from SHINE both gave informative talks, the slides from which are below.
Thanks to the IW CCG for providing funding to organise this event, which was the second event that they had supported this year.
We welcome ideas for future events.
Download our leaflet for more information about us!
CS37292 Spina Bifida and Hydrocephalus leaflet (1) (1).pdf
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Youtube video about Hydrocephalus produced by national charity SHINE: link:
Isle of Wight Association for Spina Bifida and Hydrocephalus promotes a better life for people with disabilities!
We have been granted funding for a project to raise awareness on the Isle of Wight. This project is funded through the My Life a Full Life programme supported by the Isle of Wight Clinical Commissioning Group (CCG).
Here are ten volunteers who completed their training on last year and now support new families.
We are an independent charity which provides help and support for those with Spina Bifida and/or Hydrocephalus who live on the Isle of Wight and their families. We aim to provide independence and integration in the community.
Contact us through the website or by emailing or phoning us.
Secretary: Freya Conway - firstname.lastname@example.org
Chairman: Anne Axford email: email@example.com
Members enjoying an evening's bowling at Ryde in November 2013
Whether you are someone with Spina Bifida and/or Hydrocephalus, or a relative, we welcome you to our association. For advice, support or socialising, new members are always welcome. Get in touch!
Here is our new Facebook page: https://www.facebook.com/
This is another Facebook link: https://www.facebook.com/